Communication Bridge: A person-centered Internet-based intervention for individuals with primary progressive aphasia

沟通桥梁：针对原发性进行性失语症患者的以人为本、基于互联网的干预措施

• 批准号: 10674605
• 负责人: EMILY J ROGALSKI
• 金额: $ 218.48万
• 依托单位: NORTHWESTERN UNIVERSITY AT CHICAGO
• 依托单位国家: 美国
• 财政年份: 2017
• 资助国家: 美国
• 起止时间: 2017-09-15 至 2023-08-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10674605
• 关键词: Address; Alzheimer' s Disease; Aphasia; Behavior; CNR1 gene; CNR2 gene; Caring; Clinical; Clinical Trials; Communication; Communication impairment; Communities; Complement; Complex; Counseling; Custom; Data; Dementia; Development; Disease; Economic Burden; Education; Effectiveness of Interventions; Evaluation; Evidence based intervention; Family; Focus Groups; Frontotemporal Lobar Degenerations; Guidelines; Health; Individual; Intervention; Language; Life; Measures; Mediator of activation protein; Modeling; Neurodegenerative Disorders; Outcome; Pathologist; Pathway interactions; Patients; Pattern; Persons; Phase; Pragmatic clinical trial; Primary Progressive Aphasia; Quality of life; Randomized Controlled Trials; Readiness; Severities; Social Interaction; Social Workers; Speech; Stress; Syndrome; Testing; Training; arm; base; care giving burden; clinical care; clinical practice; constriction; cost-effectiveness ratio; efficacy evaluation; experimental arm; functional outcomes; health economics; incremental cost-effectiveness; innovation; intervention effect; intervention participants; language impairment; multidisciplinary; neurodegenerative dementia; novel; person centered; personalized medicine; post intervention; pragmatic trial; primary outcome; psychosocial; remote monitoring; response; social engagement; translational potential; trial readiness; wearable sensor technology; web app; web-based intervention

PROJECT SUMMARY/ABSTRACT Language and communication impairments (aphasia) are the defining features of the clinical neurodegenerative dementia syndrome primary progressive aphasia (PPA), which can be caused by Alzheimer’s disease (AD) or frontotemporal lobar degeneration. The devastation of communication negatively impacts quality of life for persons living with PPA and their care partners. Communication difficulties in PPA can also reduce life-space mobility, shrink social interactions, and lower participation in community activities. Nonpharmacological interventions, including speech-language and psychosocial intervention, may offer significant benefit to the quality of life for persons with PPA and their care partners, but have historically lacked efficacy evidence as well as guidelines to direct best clinical care practices. We have been changing this landscape, through the development of the Communication Bridge (CB) intervention with strategically staged, rigorous clinical trials that are on a path towards implementation. The CB1 trial established feasibility of delivering our intervention at a global scale via telepractice and demonstrated gains in functional communication outcomes that were maintained 6-months post baseline. Next, the CB2 trial provided the first rigorous Phase 2a, Stage II, superiority, randomized controlled trial (RCT) of speech-language intervention in PPA. This project proposes the CB3 trial, a Phase 2b, Stage II, RCT to test whether the combined speech-language intervention with psychosocial education and counselling intervention (Experimental) shows superior response in primary outcomes for persons with PPA and their care partners compared to the CB intervention alone (Control). The RCT will be complemented by Aim 1a, which will examine mechanisms of the interventions; Aim 1b, which will assess pragmatic trial readiness following the Readiness Assessment for Pragmatic Trials (RAPT) model; and Aim 2, which will explore functional outcomes with novel wearable sensors to objectively measure life participation using a ‘Life-Space’ mobility framework. Trial outcomes will determine which intervention to put forward for implementation. The translational potential is high since the delivery model and primary outcomes are aligned with current clinical practice. In the absence of a definitive cure for AD and related neurodegenerative diseases, it is important to identify and evaluate strategies that help individuals maximize their quality of life, and this project will help fulfill this need.

项目总结/文摘